The Kendall Foundation

I have been thinking lately about a way to help others in similar situations as ours. There are so many diseases and conditions out there that challenge parents and their ability to provide love, care and opportunity for their children. We have lived this roller coaster first hand, and continue to feel the pain and emotion when dealing with Kendall's rare condition. The stress on a family comes in many forms including the financial burden to care for a child with special needs. Healthcare benefits can only do so much, if you have them. Last year alone, we paid over $13,000 out of pocket for Kendall's care which included numerous hospital stays, medical supplies, therapy and so much more. The fountain of paperwork continues to flow every month and there is no end in sight. We're lucky that Kendall's WHS diagnosis is on the mild side (micro-deletion), otherwise the requirements for care would be exponentially higher.

So, in light of our experiences, I was thinking about some way to help others deal with the stress and pain of the hand they were dealt. The answer to part of the problem is to provide financial assistance. I don't believe in donating to a cause bucket, not knowing what happens to my donation. Alternatively, I can make an attempt to determine where the funds go and to have some control over the outcome of the donation result. So, what better way than to create a mechanism to control this??? Well, I have decided to start up a foundation that will provide direct financial help to those individuals in dire need to help their children. I call it the "Kendall Foundation".

All of the details are not quite figured out, but I do know that any and all collected funds will be used to pay services directly for the care of children with Wolf-Hirshhorn Syndrome (WHS). Money will not be given to familes directly, but to the organizations that are required payment for services or supplies for the child's care. I don't plan on this foundation becoming a large entity, but yet a simple way to provide some type of assistance to those that can't give their children all that is possible. WHS is a more recently identified syndrome and is without cure. Since it is a genetic disorder which alters the chromosome make up of those affected, the only thing that can be done is to treat the conditions. Most of the children with WHS face many health hurdles ranging across the heart, kidneys and brain. More can be found be researching WHS or 4p-. Each child is unique, but comes with some similar symptoms. Regardless, the challenges are steep and with state budgets getting cut, programs to assist children are getting removed.

So, the way I plan to kick up this cause is to hold events that bring people together to celebrate friendship and common interests. With so little time on my plate to organize complex events, the activities will be held only a few times/year creating a small amount of funds, but large impact to those that it assists.

I hope to hold the first event in the next few months. More to come so stay posted!

Turning 2 Next Month

With milestones come certain feelings for us to sort out. Kendall turns two in just a few weeks and her approach to this date come with successes, yet clouded with turmoil and questions yet to be answered.

On the positive side, she continues to make developmental gains. Not too long ago, we were concerned about her not being able to get herself into a sitting position. We were also worried that her ability to make new sounds was coming to an end. In both areas, she has made nice progress. It's second nature for her to move easily between lying, sitting and into the hands/knees position. It's amazing what we take for granted and how we learn to move in certain ways. Watching her therapists work with her gives us a new understanding of the basic movement fundamentals and how muscle groups function together.

With the tubes in her ears, she continues to make more sounds. We like to believe that they are helping her hear more clearly and that she can hear her own voice better. Regardless, she is starting to mimic some of our sounds and voice movements. There are probably a dozen or so sounds that she will copy from us on a regular basis. We have some hopes of her talking, but don't expect that her vocabulary will get beyond just a few words. We can only hope for the best.

On the downside, it appears that Kendall is losing weight. She is making the transition from baby to little girl, but is thinning out and has been for the last month or so. We weren't sure if it was the case until we got her weighed at the doctor when she got her tubes. She was down to 18 lbs from 22 lbs at her peak. She has also been sick these past few days and hasn't been able to keep down food. It wouldn't surprise us if she has lost a few more pounds. Her therapists even noticed that she looks skinny. We're at a loss with what to do to get her to gain some weight. She can only handle so much food and with the night feedings coming to an end, we only have so many options to keep her nutrition up. It's been such a hard thing to manage for us and we feel so bad for her.